Tina Tully and John Clancy decided to adopt four-year old Kathleena, who was born with EB.


In an interview with The Irish Independent, Tina Tully tells Kathy Donaghy about the process of adopting son Ivan from Russia, and then daughter Kathleena from China, with the little four-year-old girl suffering from EB — a rare skin condition requiring constant care.

Primary school is only around the corner and Tina Tully’s daughter Kathleena (4) is full of questions about her life and why she has a rare skin condition that others don’t. Kathleena suffers from a mild version of epidermolysis bullosa (EB), a rare and painful genetic skin condition also known as butterfly skin.

The journey to motherhood has taught Tina that answering the questions will be a lifelong labour of love. She and her husband, John Clancy, adopted their eldest son Ivan (10) from Russia in 2011 and Kathleena from China in 2018. As well as preparing Kathleena for the questions her classmates might have about why she wears bandages on her left leg all the time, Tina and John are open and honest about telling their children about where they came from in an age appropriate way.

Read the full article here
Anyone who’d like to support families living with EB can donate here.